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What We Know...

In January of 2021, the Occipital Neuralgia Foundation teamed up with another nonprofit organization - Patients Rising.  We conducted a survey to learn more about the ON community.  Click here for the full results...

Diagnosis Time:

Only 46.5% of those who participated in the survey were diagnosed within a year.  Occipital Neuralgia is considered a 'diagnosis of exclusion.'  In other words, once a full workup has been done on the patient and other ailments have been ruled out, ON should then be considered.  We also see that it took over 8 years to get diagnosed for more than 10% of the participants.

Diagnosis & Primary Provider:

We learned that almost 60% of participants were diagnosed with Occipital Neuralgia by a neurologist.  However, only 45% of those participants continued under the care of a neurologist.  These numbers are alarming for multiple reasons.  Neurologists are among the first doctors a patient sees with a complaint of head pain.  Therefore, we expected the first number to be higher.  It appears that once patients received a diagnosis of ON from their neurologist, they needed to see a different physician to receive treatment.  As we can see, only 4% of participants were diagnosed by their primary care physician, however, primary care physicians remain the provider of ON care for over 20% of participants.

Onset of Occipital Neuralgia:

We posed the question "How did your Occipital Neuralgia begin?"  41.6% of participants explained that their symptoms either came on suddenly, began gradually, or they did not know.  40.8% of participants were able to relate the onset of their symptoms to a trauma related injury, such as a whiplash injury, concussion, car accident, etc.  The remaining 17.6% of participants were able to relate their ON to comorbid states or underlying diseases.  Among these diseases were Ehlers Danlos Syndrome and meningitis.  ON onset secondary to surgery is also included in the "other" category.

Occipital Neuralgia & Pediatrics:

There were 7 participants under the age of 18 in the survey.  Of those 7 participants, 6 (85.7%) reported "having minimal access to specialists because considered a pediatric patient."  Unfortunately, many of the physicians who specialize in Occipital Neuralgia do not see pediatric patients.  The inability to see ON specialists creates another barrier for pediatric patients as they try to navigate their symptoms, pain, treatment, and an accurate diagnosis.

Clinical Trials:
In the link above, you will find information about the current clinical trials being done for Occipital Neuralgia.

As described above, it is apparent the challenge in getting properly diagnosed.  Unfortunately, the battle doesn't end there.  There are only a limited number of treatments available to 'cure' the problem.  While certain treatments might work to reduce the pain, they often don't fix the underlying condition. 

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